Thursday, July 9, 2015

Yesterday I spent time cleaning out some toys and books, donating and trashing and reorganizing. I came across a good number of toys with memories that started like this: I remember this! It was a birthday gift that we asked for because the little pieces were supposed to help with developing a pincer grasp! I know now, as a seasoned therapy-participating parent, that literally any toy can be used in a way to target therapy goals (fine motor, gross motor, imaginative play, speech games) but when Maya was small, missing milestones, and difficult to motivate (if you moved a toy from her reach, she would generally just find something else to look at, or wait to see if it would come back) I was constantly hunting for some thing, any thing, that would be the thing. The thing that she loved enough to fight for . . . the thing that was so rewarding that she would work her fingers to activate it . . . the thing that she wanted so badly she would do the work of trying to pull up to get to it.

These type of memories, in which I thought meeting milestones was somehow just an issue of motivation and willingness to work a little harder, sting in a particularly specific way. It's not really a memory of the toy, it's a memory of the way that I thought about the toy . . . a little time-hop into the mind of the mom that I was back when we were just delayed on the path of typical development, when I thought that if we worked hard enough and smart enough we could still catch right up . . . into the mind of a mom who doesn't see yet that we're on a totally different road.

I cleared things out and thought "I should write about this, this stuff of special needs parenting, the pursuit of some object that will elicit some behavior that will solve all of the problems."

And then I remembered that once upon a time (four years ago), I did write about it, but it never got posted. So, here it is:

The Holy Grail of the "Developmental Delay"

“I really think you should put up a barre,” Karen said,
gesturing to the wall in our hallway, about 2 feet off the ground.

“A barre? Like, a
ballet barre?” I doubtfully looked where
her hand was, the walls smooth and light blue, and imagine the screws and rods that
would support a barre. A week earlier I
had managed to create three extra holes in the bathroom wall just attempting to
hang a picture frame . . . I could probably do some impressive damage trying to install something
sturdy enough to bear weight. Big holes
and crumbling plaster. Sounded like a
terrible idea. And yet . . .

“You really think it would help?”

Karen started talking, slowly at first and then with
increasing excitement, about the benefits of putting up the barre . . . and I
let myself get swept in. I could see it
too---the physical therapy sessions of pulling to stand, then creeping sideways
with both hands holding on, eventually to learning to walk with only one hand
on the barre. Maybe even taking steps
backwards? Sure, why not!

Amid this animated conversation about the impressive
physical feats that she would undoubtedly accomplish, if only she had a ballet
barre, Maya sat, a bewildered 18 month old lump. A relatively new master of sitting and slow
crawling, she wasn’t showing any inclination to stand up, let alone walk.

I envisioned the ballet barre and subsequent wall wreckage
and thought to myself, Well if that’s
what she needs to learn to walk then we’ll just have to put it in, walls be
damned. “Interesting idea,” I tell
Karen, “let me think about it.” We’ll
see her again soon enough, in two days she’ll be back for another PT session.

The day wore on and I thought about it. I rolled the idea around in my head while
making dinner, cleaning up, putting Maya to bed. I didn’t mention it to Dave, who would ask a
lot of questions and then taint my thought process by adding in his
opinion. There was a little voice in my
head saying Don’t do it. Don’t get your hopes up, and I couldn’t see
where it was coming from.

Then I started straightening up the apartment, and I saw. Oh, I saw.

First, on the kitchen counter, I saw the rice bin. Literally, a bin filled with rice, hiding a
handful of buried toys. The rice bin had
initially taken up residency in a corner of the living room, bringing with it
the promise of sensory stimulation.
Touted by her occupational therapist as a possible solution to the fact
that Maya’s chubby little hands tended to ball themselves up into tight fists,
we were going to rub her hands through the rice. Her fingers would open and she would paw
through the rice in hopes of finding buried treasures, if only we had a rice
bin. So we got one.

Did she unclench?
Well, a little, I guess. Long
enough to grab a fistful of rice and shove it into her mouth, causing gagging
and tears and some panic (the first two from her, the last one from me). She learned that use a quick slide of her
balled fist across the rice would send a hundred little grains skittering
across the wood floor. We kept at it
occasionally, but threat of another mouthful of rice combined with the sharp
little grains that lingered and stabbed my unsuspecting bare feet for days
after a rice bin session outweighed any inklings of progress. That sucker was just waiting to be dumped
down the garbage chute.

I walked toward our bedroom, picking up a loose sock in the
hallway, and saw the ball pit. The
red-and-blue-and-yellow inflatable ball pit (big enough for one adult & two
children), filled with 200 plastic balls.
Well, not quite 200, as they were constantly on the escape, rolling
under dressers and bookshelves, joining the scattered rice in dark corners. The ball pit was a gift from a therapist,
arriving with the promise of increased proprioception (awareness of your body)
and sensory stimulation. She would
wiggle among the balls, and they would press on her body and give her feedback
(“you’re lying down! you’re rolling and
applying pressure to your right side!”) and her muscles would respond. She would make a lot of progress and be
stronger and more balanced and have a lot of fun too, if only she had a ball
pit.

The day that it arrived I inflated the ball pit and filled
it with balls, and I picked Maya up and whispered excitedly to her about going
to play in the balls.

“Oh my goodness, what fun!
You can sit in here and play with the balls!” I lowered her carefully,
the sea of plastic balls parting and plonking as her weight shifted them
around.

She looked up at me, eyes widening. She stiffened, and fell backwards. A sea of balls rolled up over her neck and
arms, threatening to swallow her entirely.
She started to wail.

Not exactly what I had hoped for.

Subsequent tries were less tear-inducing, but not exactly
progress filled, either. Don’t get me
wrong, we eventually had fun with the ball pit, but I didn’t see any direct
developmental fallout. The balls were
fun, but that was about it.

The small anti-barre stirrings were getting stronger.

I threw the sock in the hamper and got changed, trading
jeans for yoga pants, and headed to the living room. Dave sat on the couch, typing quickly on his
laptop. The tv was on, but he wasn’t
watching it. I picked up stray board
books and tossed them into Maya’s book bin, gathered the plastic farm animals
and stuck them in their appropriate plastic container. Stuffed animals went into the big wicker
basket. Our living room was a great
divide---computer saddled adults on the couch to the right, children’s toys and
debris on the giant red foam mat (a birthday present, special ordered from a
therapy warehouse, to cushion Maya’s falls, which tend to be hard) to the left. With the smaller stuff cleared away, I turn
and eyed the trio of large gym cushions.
Dave kept typing.

The gym cushions were a discovery on Craigslist---an amazing
deal, a set of three for half the price of what one mat typically sells for. They were old but in great condition, and big—each
coming up to about knee height---a large blue square with a tunnel shaped
cut-out, a green mini-staircase, and a red ramp. We had to have them. Winter was coming and we wouldn’t be able to
use the playground for physical therapy anymore---these mats would be perfect
for learning to climb, balancing, and motivation. She would be climbing up and down the stairs
and sliding down the ramp in no time, if only she had these gym cushions. When Dave arrived home from work that night
I breathlessly handed Maya over to him and said “I have to drive downtown to
buy gym cushions---the seller is holding them for me until nine---bye!” and
rushed out the door. Two hours later I
returned, carrying each one in triumphantly (with Dave applauding), trying not
to notice that they looked kind of large and clunky in the middle of our living
room floor.

Maya loved them. She
loved hitting them and smushing her face into them. Putting toys on them and crawling through the
tunnel and licking them. They were a
welcome addition, breaking up the boredom of being trapped inside during the
winter months.

But they didn’t make her stand.

And they didn’t teach her to climb.

And they really were big and cumbersome, which I was
reminded of every night. Trying to stack
them into the corner of the room was no small feat. It often took more than one try to get the
balance just right, and create the gym-mat-totem-pole that reached my eye
level. Dave had stopped typing. I took two steps back, willing the pile to not
fall over. It stayed. I clasped my hands over my head
victoriously. Dave laughed, and resumed
typing.

I sank into the couch and pulled my computer from the side
table onto my lap. I clicked my way
through email and Facebook, paying only the slightest attention to the
screen. I did a mental inventory of the
other therapy-based stuff that we’ve accumulated. Oral motor tools fill a drawer in the
kitchen, along with modified spoons and cups for kids with feeding
disabilities. A child-sized walker waits
in Maya’s closet, along with walking wings and outgrown orthotics. A stretchy blue therapy body suit sits in her
top dresser drawer. Even her toys, toys
that plenty of typical children have, were purchased with ulterior
motives---this piggy bank will be great fine motor practice, this gumball
machine will be great for crossing midline to deposit the balls in the top of
the machine.

Not often do we just think hey, let’s get this—it looks fun.

And that’s ok, I think.

I don’t have any issues with getting things that look fun and will (maybe) be helpful. The ball pit and the gym cushions were nice
additions, even though they didn’t yield any miraculous results, because
they’re also fun. (The rice bin? Well, I
could have done without the rice bin.) But I can’t, I won’t, pin my hopes on things anymore. I’ve realized now that there is no thing that is going to rock our
world. There’s not a thing that will
help Maya to suddenly catch up. We will
never look back and say “Thank god for that ballet barre---she wouldn’t be
walking today if we hadn’t installed it!”

The therapists haven’t gotten there, though. They think of the limitations of our
environment (like the absence of a ballet barre) and become fixated. Karen will mention it many times, I
know. And why bother to burst that bubble? Her belief that the lack of a
barre is holding us back just shows how much faith she has in Maya---“Oh, this
strong girl would surely walk faster if her parents would install a
barre.” Yes, she should keep thinking
like that.

I will decline the barre project, likely blaming it on Dave,
who doesn’t have to face Karen three times a week like I do. Let him be the bad guy. “Oh, Dave really doesn’t want to rip up the
walls,” I will say, “maybe instead she can work on the gym cushions or along
the sections of fencing that we put up in the living room for her to practice
pulling up on?” And she will relent.

And a year later, with a lot of work, but no ballet barre,
Maya will walk.